Quality of Life Advocate

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The Next 30 Days

With 30 days left in Hiya’s Medicare/Medicaid coverage for care facility stay, I was concerned for Hiya. Where would she go? How could she even physically muster enough energy to move out of the facility? We both researched and called other facilities, but were not overly concerned about it as you might think we needed to be. Perhaps we thought a miracle would happen or that the 30 days would outlive Hiya.

In any case, the 30 days came and apparently without a court order or nasty-gram from Medicare or comment by the care facility staff. When I asked Hiya as to whether she had received notice from the agency, she brushed the question aside as if it wasn’t worth her energy to answer it. To this day, I don’t know if the deadline had truly been acknowledged or not. I can only assume that the care facility made a management decision, and a compassionate one at that, to let Hiya remain in the facility for her remaining days, without coverage or reimbursement to the facility. Perhaps there is some humanity in managed healthcare after all.

Not everything stayed the same however. Attitudes among the staff and head caregivers seemed to change; interactions became more contentious and Hiya was left to wait longer and longer before requests for aid were answered. At least this is the story I received from Hiya. Of course, when I was visiting I didn’t see any of this lack of attention. The only clue I had was the eyeball to eyeball look between me and the charge nurse mutually acknowledged that “yes,” Hiya was demanding and a handful.

And, why shouldn’t she be demanding? It was her life she was fighting for. Other than the weekly visits from me, there was no one else spending time with her to fight for her and with her. A self-advocate for all her adult life, Hiya knew what she needed and knew what the care team should be capable of. Getting them to deliver was the challenge.

One example of this was shower time. Hiya refused to shower in the facility unless it had been properly cleaned and disinfected. Before selecting the shower stall she would have staff wheel her into each one so that it could be inspected. If it had any remaining hair near the drain or smelled remotely organic, Hiya would quickly disqualify it.

On one weekend when she desperately wanted to shower and staff had not come to help her do the stall to stall inspection, I wheeled her around. Although none of the stalls truly measured up to satisfaction, I did come upon a solution. You see it was Hiya’s aversion to her bare feet touching the shower stall floor that was the primary reason for her concern. She did not want to contract any more disease from anyone.

After a short trip to CVS/pharmacy for two pair of plastic, industrial looking sandals, Hiya was finally able to comfortably select and take her showers. Sometimes solutions come easiest to those of us on the outside looking in.